Any information, help would be appreciated! Is this normal?

Hello, I was wondering if anyone could help me or relate to this monster and my experience thus far. My uncle David is 40, was diagnosed with stage 4 GBM on 11/22/12, they removed 98% of the tumor on 12/05/12 and so far physically he has been doing well. He has been receiving radiation, taking steroids, and is to begin temodar and a new clinical trial vaccine made from his white blood cells in 2 weeks. But he is a completely different man, he has a wife 2 young sons, my father and me, we all love him dearly and are there every step along the way but he acts and talks as though he is going to die no matter what. He also has become obsessive about what ifs? And asks the same questions and says the same negative things over and over. Is this a side effect? Or is he always going to be this way? Anyone know anything about this vaccine? Any info on anything I've stated would help tremendously. My family and I are lost and discouraged.

Lauren,

Sorry about your uncle.  He is still early on in his journey.  His behavior could be because of depression, the tumor, the steroids, the radiation to his brain, etc...  I would say that it took us a good year for my husband to sort of accept his diagnosis and for us to renegotiate our marriage. 

He may rebound and be more positive, or he may not.  My husband was never truly the same person after the diagnosis.

It sounds like he is blessed to have many people around him who love him.  Hang in there and be there for him.  It really is a journey.  God bless,  Sally 

Hi Lauren, I am sorry anyone ever has to learn about gbm.  I am sure your uncle is scared.  the dr.s aren't very hopeful usually.  I am a 20 year survivor of gbm.  Alot of people are living longer than the statistics say.  my whole story is at yasg.com under bios kathleen rhodes.  if you go to virtualttrials.com you will find many more survivor stories for him.    Try to be patient and remember beside the shock of diagnosis his brain has been chopped up from surgery, fried from radiation and now marinated with chemo.  that's alot of trauma for anyone to comprehend.  depending on tumor location different aspects of his abilities and personality may be affected.  after radiation don't be surprised if extreme fatigue set in.  you have found a very helpful site for info and support.  prayers for  strength for you all,  kathleen

On Feb 04, 2013 8:41 AM LaurenJ wrote:

Hello, I was wondering if anyone could help me or relate to this monster and my experience thus far. My uncle David is 40, was diagnosed with stage 4 GBM on 11/22/12, they removed 98% of the tumor on 12/05/12 and so far physically he has been doing well. He has been receiving radiation, taking steroids, and is to begin temodar and a new clinical trial vaccine made from his white blood cells in 2 weeks. But he is a completely different man, he has a wife 2 young sons, my father and me, we all love him dearly and are there every step along the way but he acts and talks as though he is going to die no matter what. He also has become obsessive about what ifs? And asks the same questions and says the same negative things over and over. Is this a side effect? Or is he always going to be this way? Anyone know anything about this vaccine? Any info on anything I've stated would help tremendously. My family and I are lost and discouraged.

Greetings: my wife too is fighting the same battle, but she is very spiritually strong and hopeful. The fact that they removed 98 percent of it is great news . As a loving niece, and obviously you are, continue to tell him how successful the operation was and share with him success stories of others. Tell him that the most common trait among survivors is having a positive outlook. Yes it is very hard and the journey is tough . But love endures all things. Give him time and let him express himself regardless. I will pray for David. Tell him the story of King David and how he slew the giant warrior and won against the odds. He too must face this giant and believe. God bless you and your family. Love him and cheer him up as much as possible. Tell him he is not alone. Gerard

Lauren, So sorry about your uncles dx, but even tho my husband's cancer was not the same as your uncles, the beginning months are all about acceptance.  My husband was dx with MM and MF at the same time, and the doctors told us they were both terminal.  It took about 6 months for him to accept the fact that it was not going to get better and that we had better do what we can now with our kids and grandkids before it gets to the point where we cannot do things anymore.  He was dx April 2010 and passed July 2012, with new cancers popping up (liver and spinal cord).  The meds do have an effect on their train of thought and outlook on things, but give it time, once the body gets used to medications/treatments - he will come around a little bit better.

He finally accepted things, and when the doctors told us there was nothing more they could do to help, we went into hospice, and i stayed home from work since that day to be with him.  He actually wanted to plan his memorial service (he donated his body to cancer research), write his own obituary, and plan the memorial luncheon.  I really believe this was his way of dealing with his soon to be demise.

I wish you all luck, I so remember the way things were in the beginning.  Others say they understand, but until you have been there, they don't.

sue

Hi.  I too, am sorry to hear about your uncle.  This is a mean disease. 

I will echo what someone else said.  It could be one of many things, or a combination of a couple or all of those things.  Depression, meds, simply his way of dealing with it.  The steroids can mess with him (anger).  Just the diagnosis of cancer and going thru all of this can be simply depressing.  We don't know if it was the tumors or the higher dose steroids for my mom, but when that medication went up, she was negative about a lot of stuff.  She cursed a LOT more.  However, she was never negative about the cancer or life itself.

My best advice?  Never give up the fight.  Ever.  Never stop believing in your uncle.  However, let him act how he wants.  He's the one going thru this.  He has the right to be depressed.  Let him be obsessive about what ifs.  Turn the table around and ask him to talk about it.  Agree with him.  Tell him yes, eventually one day, we all die.  Ask if he wants to be an active part of his end of life planning.  I found it easier to agree with mom when she was in her moods than not.  Right or wrong, it didn't matter.  I just told myself it was the medication and not my mother talking.

Also, what we did for mom:  At her docs appt, one of us left the room with the doc and let him know how she had been acting.  She would never admit to the doc she was depressed.  She would put on a smile and tell him everything was perfect.  Told the doc how she had been acting, her moods, etc.  He told her that he was prescribing an antidepressant to counteract the effects of the steroids.

Sorry, I don't know anything about the clinical trial/vaccine.

Best wishes are with you and your family

I agree with you to a point with the patients actions but someone needs to talk to the patient and ask them why they feel the way they do. We found our minister very helpful in discussions. They have every right to be angry....the "why me" syndrome. I know I did it myself.  

As far as communication with the doctor. A doctor can read his patient very well. Just looking at their pallor tells the doctor a lot. Most every patient will tell the doctor everything is fine. I had great communication with my husbands doctor.  We had each others cell phones, email and texted daily.  He would text ne after an appointment and ask me to call when I got my husband settled.  he would ask "so tell me what is really going on...I feel he was not honest with me today". It was great to have that communication. At the end we were texting every hour when I sent the vitals.  A patient knows if one stays back in the room with the doctor and they resent it thst everything was not in the open.

Just m y opinion but I have been a caregiver way too often.

Hi Lauren,

My husband had a cancer vaccine after his first recurrence. They removed his tumor (craniotomy).  They removed the cells from his blood.  It took a couple of hourse.  Then, the vaccine was created from the blood cells and tumor tissue.  He received the vaccines as a simple shot.  He received a total of three shots over a couple of months.  My husband had NO side effects, and he felt pretty good the entire time because he wasn't on any chemo for a couple of months.  The vaccines are very promising.  I would recommend that you visit the UCLA website or the virtualtrials website.  They have some great reports on dendritic cell vaccines with statistical information.  People are living MANY years after they received vaccines.  Please share this information with your uncle. Maybe it will improve his spirits!!!  Take care. 

Hi Lauren,

My husband had a cancer vaccine after his first recurrence. They removed his tumor (craniotomy).  They removed the cells from his blood.  It took a couple of hours.  Then, the vaccine was created from the blood cells and tumor tissue.  He received the vaccines as a simple shot.  He received a total of three shots over a couple of months.  My husband had NO side effects, and he felt pretty good the entire time because he wasn't on any chemo for a couple of months.  The vaccines are very promising.  I would recommend that you visit the UCLA website or the virtualtrials website.  They have some great reports on dendritic cell vaccines with statistical information.  People are living MANY years after they received vaccines.  Please share this information with your uncle. Maybe it will improve his spirits!!!  Take care. 

The short answer is yes, that's normal. However, many people with brain tumors adjust to their situation and develop a more positive outlook with time. He's dealing with a lot right now -his own mortality, steroids (which can have a huge effect on emotions), posssibly continued swelling in his brain, chemo, radiation - of course he's going to struggle. From my experience, I highly recommend a visit with a psychiatrist. There are drug and non-drug treatments for depression and anxiety. They can help.